Stuffing down feelings: Bereavement, anxiety and emotional detachment in the life stories of people with eating disorders.

This study aimed to explore the life stories of people with eating disorders in order to better understand possible contributing factors to their development. It used a qualitative Life Story method, in order to reduce the tendency to focus on the negative in the lives of people with eating disorders. Sixteen people in contact with an eating disorders charity participated. Data were analysed using a thematic analysis. Despite the attempt to elicit both positive and negative information, most themes from the life stories were negative. Here, the focus is on the three most common themes reported, which are less often reported in previous research: 1. substantial bereavement and loss; 2. major issues with anxiety; 3. difficulties coping with emotions. A model is proposed whereby major losses and the resultant anxiety can lead to emotional deadening and “stuffing down feelings” with food, leading on to an eating disorder. This model implies that interventions need to consider psychological factors in an eating disorder, especially the use of it as a dysfunctional coping strategy, as well as the behavioural and physiological aspects of an eating disorder.

More longitudinal research on the development of ED is required (Ball & Lee, 1999) but it is rare because of the resources required, which would include a follow-up from childhood to early adulthood and a large sample size to include sufficient people who develop eating disorders. An alternative is the use of narrative methods, such as the life story method employed here, to obtain data about people's remembered history. While retrospective data is subject to biases of memory and narrative reconstruction, narrative methods can illuminate the interplay of factors in a person's life that may be pertinent to their eating disorder.
There is some quantitative longitudinal research on disordered eating, measured by questionnaire, but a high questionnaire score is not coterminous with ED diagnosis.
Predictors of disordered eating can be categorised as: (a) prior issues regarding weight Life stories of people with eating disorders 4 and/or body image, including prior disordered eating, weight-related teasing and bullying; (b) anxiety, perfectionism and low self-esteem, which also predict many other psychological issues. For some people these may be related to prior weight issues, for others these may be independent risk factors; (c) Poor relationships with parents, which additionally predict a wide range of psychological issues. One longitudinal study explicitly looked at predictors of EDs and found that childhood adversity in general, as well as parenting issues, were predictive (Johnson, Cohen, Kasen, & Brook, 2002a).
Most studies are retrospective and conceptualised as studying the relationship between ED and some set of possible risk factors. Participants are asked about, or complete questionnaires about, their ED and their current and prior psychological condition. The implicit assumption is that bad things, such as an ED, are caused by prior bad experiences.
Consequently, participants may be biased towards reporting prior bad experiences. Davies (1997) provides relevant examples of this type of bias in addiction research. Attempting to reduce such bias, the present study used the Life Story Method (McAdams, 2008a), which involves retrospective interviews that ask participants structured yet openended questions which facilitate reporting key life experiences. The method did not ask questions specifically about eating behaviours, allowing participants to place such issues in their lives however they felt was appropriate. This approach aimed to explore the life stories of people with eating disorders in order to better understand possible precipitating or contributing factors in the development of these disorders.

Ethics
The research was approved by the procedures of the ethics committee of the Faculty of Health Sciences of the University of Hull, which accord with the Declaration of Helsinki. In conducting the research, there were three substantive ethical considerations.
Life story data are intimate and detailed, so the confidentiality of participants and all other people and entities was paramount. All names, geographical locations and other key details were anonymised. Quotations have not been attached to a participant number or name to further obscure identity.
Participants had or were recovering from EDs, so there was a duty of care. Most participants were already under the care of a local ED charity and had regular support from mental health professionals, support workers or their own support network. As interviews concluded, participants were asked to reflect on how they had found the experience and the researcher checked that participants felt alright and knew how to gain support if Life stories of people with eating disorders 7 required. Interviews were conducted by health and social care practitioners (the first and third authors and another) who were competent to provide immediate emotional support if required.
Some risk of vicarious trauma existed for the researchers (Jenkins & Baird, 2002). There was research supervision by the first author, a clinical psychologist. Plus, for the second author who led on analysing the data, reflective journaling was used to allow the expression of any thoughts or feelings which had surfaced (whilst protecting the confidentiality of the data) during the interviewing and analysis stages of the research and ensuring that regular breaks were taken to reduce stress.

Participants
Service users were informed of the research project by the service's psychologist (1 st author). Volunteer participants (n=16; 15 female and 1 male) were all current or former service users at a North of England based eating disorders charity, at various levels of recovery. All who volunteered were interviewed, without any purposive sampling strategy.
The service is inclusive and allows self-referral, so while all participants described serious life-impacting issues with their eating, they did not necessarily have a specific diagnosis. The age range was from 19 to 58, 3 were students, 3 were in their 20s, 4 were in their 30s, 5 were in their 40s and 1 was in her 50s. All but two were university educated. Eight were or had been married or in a long-term partnership, while 4 had children.

Analysis:
Transcribed interviews were analysed using thematic analysis (Clarke & Braun, 2014), using the recommended phases: reading and rereading of transcripts with preliminary notes; initial coding of themes; organising themes and identifying superordinate and subordinate themes; reviewing data in light of draft themes; revising themes. The themes discussed here were the most common superordinate ones. Quotes used to support the themes have been edited to reduce repetition and irrelevant material (indicated by (…)), no attempt has been made to render regional accents.

Results:
All participants included having an eating disorder as a self-selected episode in their life stories. All participants also told stories that largely focussed on negative events and experiences, despite the life story method being neutral in how it asks about life.
Consequently, as shown in Table 1, other than perfectionism and high achievement, the Life stories of people with eating disorders 9 themes found in the majority of the life story interviews were negative or problematised.
Because space is limited, here the main focus will be on the three themes found in at least 15/16 participants: bereavement and loss; anxiety and depression; doing feelings. These are more novel as issues related to eating disorders, whereas the others in Table 1 have been repeatedly identified in previous research. This is not to suggest that the other themes are unimportant, indeed many of the stories told of complex lives with multiple challenges.
Before discussing the three themes, we will summarise two women's stories to illustrate how the themes reported here fit into diverse lives that also included the other themes commonly found in research on EDs, notably depression, trauma and maltreatment and perfectionism.
The first example story includes maltreatment in childhood: One woman in her 20s told of growing up with an alcoholic, depressed, anxious and neglectful mother [maltreatment], being bullied at school for wearing glasses and for being clever [maltreatment], then becoming anorexic. She was close to her grandmother, but lost her when she was 14, which she did not deal with well [loss], for she felt she had not learned how to deal with feelings [doing feelings]. She told of her nephew being shaken as a baby and also of another event that was so bad that she was unwilling to talk about it. At her worst, depressed, she had attempted suicide [anxiety and depression]. However, she also felt that having anorexia nervosa had been the best thing in her life, because it had eventually led to therapy, personal growth and improvement. She married, before recovering, had two children and was currently studying for a Masters degree. She said 'she would like to say' that she was fully recovered, distancing herself slightly from that possibility, although she mentioned that she tended to snack on chocolate as an illustration that her diet was not completely healthy.
Another woman did not tell of maltreatment as a child, but described being a fussy eater up to age 5. At this time she had her appendix removed and had to be deprived of food for three days [trauma?], which led to her eating 'everything and anything' for the next five years, becoming 'quite chubby', as she matter-of-factly put it, being put on a diet and taken to activities that were exercise-based. This led on to doing dance at a school that emphasised performing arts, although she had 'idolised' university since she was 12 [perfectionism/ high achievement]. All this led to her eating disorder. Additionally, she had kidney failure when she was 11 and again seriously at 19 [trauma]. She and her parents both restricted her diet until she was about 13. As academic pressure increased, she became more restrictive. By the time of A-levels she was fainting and developed physical problems due to her restricted diet. She had low self-esteem [anxiety and depression] and had been in an abusive relationship where the police were involved [maltreatment]. At University living away from home she continued to be a workaholic, to restrict, and re-engaged with sports which often led to her fainting and to extreme tiredness [perfectionism, anxiety?].
Due to having so many things on, she felt out of control and her eating disorder got worse because she could control 'my food and my size.' She was diagnosed with anxiety and depression and at time of interview was repeating a year, having failed an exam (the first time ever) due to fainting and relapsing to the eating disorder. Her best experience was getting good A-level results, but she described being extremely anxious beforehand [anxiety and depression]. She also described multiple bereavements in the family and that her parents had considered divorce more than once [bereavement and loss]. Losses included her brother dying of cancer when she was eight and the loss of many other relatives, although she expressed pride in her ability to be fine about this despite people criticising her as 'cold' [doing feelings]. Her goal was to become a supreme court judge. She felt recovered at time of interview and felt that she had moderated her drive for perfectionism and high achievement.

Bereavement and Loss
All participants reported bereavement, as well as other losses in their lives which severely impacted them. Some reported multiple bereavements. Six participants identified bereavements as their worst childhood memory. Some participants had experienced the death of a close family member before developing an ED. Participants also reported experiencing unresolved bereavements that they felt they had not dealt with or ever gotten over. Unresolved bereavement can have persistent adverse effects, where the initial pain of the loss remains intense for many years and sorrow and rumination underpin a lack of acceptance of the loss (Shear, 2015). Many participants experienced significant loss in their lives other than through death, such as divorce, the loss of a relationship, health, career, freedom, fertility and loss of own identity and felt that the losses played a significant part in their life story.

(Sister) said you have to go with mum because I think she felt if I didn't we would just grow apart. Whereas I did everything with my dad."
So, all participants remembered substantial bereavement and loss in their younger lives.
However, in general stories did not attribute participants' eating disorders to these or other adverse life events. Only five participants mentioned that the difficulties they recounted had contributed to their general psychological problems, of whom only two specifically mentioned their eating disorder.

Anxiety
There was a level of anxiety which affected thoughts and behaviours present in the life stories of all participants, both in the present day and in childhood. Common anxieties included catastrophic worries and avoidance of everyday activities. One woman described being anxious and fearful as a child due to being beaten by her parents for causing any mess or wasting food.
"And there was a lot of unpredictability; we never knew when she was going to blow, and when she did blow she just wrecked the house if she didn't get her own way…She would just wreck the house. Probably the unpredictability, I was just on edge as a child all the time" She then described her lifelong anxiety which she feels increases in severity as she gets older and leads her to try and control her life as a safety behaviour.

"I just worry about everything, like the kids from London and all these attacks I am thinking oh god, ..the children get. And just let go thinking just let life happen, but I need to control. I think that's when I figure out the control, and I think that's what I would like to do not control."
Another woman developed anxiety after her father became emotionally distant from her and started to cruelly mock her in front of others.
"I only really struggled with anxiety, and that was something I definitely did want to get better from because it was just, like, pretty much ruining my life." For her, this led to avoidance of new experiences and a preference for being at home in a safe place.

"But certainly, was frightened of going on a plane, not because of it crashing and stuff, just 'cause it was all like alien to me and I don't like pushing myself to do new experiences. I'd rather stay at home, do you know what I mean, because it's easier."
Another man was diagnosed with anxiety and depression, which he had not recognised, presumably not fully realising that people with anxiety and depression are not unhappy continuously.
Life stories of people with eating disorders 15

"I was diagnosed with severe anxiety erm disorder which is linked to my panic attacks and fainting and then I also got diagnosed with depression as well, which I though was really unusual because I am a really happy jolly person"
After he had relocated, he was unable to pin-point the cause for his physical symptoms until they developed into a panic attack and emotional breakdown.
"I was starting to feel ill but I didn't know what was wrong. I just thought it was the excitement of moving and relocating and whatever, I wasn't sleeping. And that's when the bingeing started because I couldn't use the kitchen. I was ordering take-aways and living off pies, pasties Anyway I got made redundant, erm, from that and I got, I managed to get a job back with my old company, but I had to relocate. Woke up one morning and I couldn't move,

I couldn't get out of bed. I was breathless, erm, I managed to get up, get myself to work and I couldn't get out of the car. So I just sat in the car and I just broke down"
Other participants described a fear of anxiety itself that worsened things; worry that severe anxiety will return to ruin future life events.
"But at the moment because I'm sort of suffering with like anxiety and stuff at the minute, I am frightened that when I get these feelings and these tightenings in my chest and I start to panic, I am scared that it'll…that it's going to set me back." "And it spoils things. It's like the wedding again just because it is quite important at the moment but like, I don't want to ruin that day because I can't cope with being me and I do blame, I blame myself for it but I am like, why don't other people feel this. Why is everyone else seems to be fine having like coffee and cake and like, you know when it's like a bit warmer and people are putting on skirts and stuff, not like really short but just a skirt and I think like, why can't I do that?" This woman developed anxiety as a child which she attributed to her mother's anxiety about her father's wellbeing, which she also felt to be her worst childhood memory. In short, all participants experienced significant anxiety and some related this to recurrent anxiety provoking events from childhood.

Doing feelings
Many participants told of difficulties expressing or describing emotions. Sometimes they were quite explicit about this, at other points in the stories it came through as contradictory statements, uncertainty about their own behaviours and motivations and in difficulty explaining their beliefs. Some participants felt unable to cope with life challenges and used restrictive behaviours instead as something that they could control.
One woman described her adolescent years as "trying to stay thin and block emotions out".
Others said similar things. "I have had grandparents, aunts and uncles. You know just, we have quite a lot of deaths in the family and I cope a lot better than people expect me to cope" "So I, I kind of turn round and I go, if somebody's died, I go, "Hey, ho."…It happens. So, you know, at well," and I was, like, it's, kind of, true; I just didn't." Additionally, some stories initially narrated an account of developing an ED in childhood and adolescence, then, when asked more direct questions such as 'What was your worst childhood experience', told about major and traumatic life difficulties that had also occurred. It was as if the story of the ED had come to block and replace the other upsetting narratives. Participants told of using ED behaviours as something that they could control when things were difficult. It also seemed that having an ED was a way of detaching from other problems. While focussing on restraint, they needed to think less about emotional events such as bereavements.

Discussion
This study found that people with EDs remembered substantial bereavement, sometimes multiple bereavements. All participants told of substantial challenging losses that had affected them badly, being, for example, the worst thing that they could remember from childhood. Findings using the life story method confirm that the precursors of EDs and disordered eating often include major stressful life events (Bennett & Cooper, 1999;Ball & Lee, 1999). Thinking about severity rather than causality, the events reported by most participants potentially constitute severe trauma (Cohen et al., 2012) because they were often repeated, involved family members and had major consequences, although participants' stories did not generally mention Cohen et al's (2012) final criterion of internalising responsibility for the events. It appears that it is possible for people with eating disorders to be traumatised even if they have not specifically experienced maltreatment, although some reported both.
One cannot infer cause and effect in a retrospective narrative study, but all participants also told of struggling with anxiety, and having difficulties with emotions. This is concordant with participants reacting to repeated trauma by learning that bad things can happen and becoming anxious and also detaching emotionally (Cohen et al, 2012). Some participants came from families that reportedly did not 'do' emotions. Berge, et al., (2012) found that transitions, including bereavements and maltreatment, without emotional support from the family could precipitate eating disorders. Participants' stories did not tell of the impact of bereavement and other trauma on their parents, which may have affected the entire family's handling of emotions and also have reduced the support provided. These events may have been formative in the development of an eating disorder, but they also led to anxiety and avoidance coping. Avoidance coping tends to impair academic performance (Boyraz, Zhu & Waits, 2019), so perhaps eating disorders can serve the function of detachment without avoidance. This enables the person to continue to engage and perform adequately in stressful situations, such as in education, while using their ED behaviours as something to control (Williams & Reid, 2010), with the added benefit that this control prevents the typical weight gain associated with stress (Wardle et al., 2011).
Weaknesses of this study were that it involved a modest number of participants, mostly women, and was retrospective. However, the methodology structures the life story in a balanced way, rather than focussing on negative antecedents of current problems.
Nonetheless, the stories that were told and the themes in them were negative and told of serious life challenges that predated the eating disorder.
Recovery from an eating disorder does not necessarily entail being symptom free (Slof-Op't Landt, Dingemans, Torre Y Rivas & Furth, 2019). The present data suggest that often this may be due in part to the person still not having dealt with whatever serious adversities they had experienced prior to developing an eating disorder. An eating disorder, like other mental health problems, can be both a consequence and symptom of life adversities. To fully recover, people may need to learn to identify, accept and deal with emotions and thoughts, including about bad things that they had done in the course of their problems. Moreover, with serious trauma 'recovery' may be a misnomer because trauma is not a 'condition' or a 'disease', so moving on from trauma does not return to some normal predisease state. Instead, knitting oneself into society (Cyrulnik, 2009), may require learning alternative ways of coping with negative memories and feelings other than 'stuffing them down' and learning psychosocial skills that may have been previously impaired or absent, such as trust, doing feelings and remaining engaged even when life becomes negative. From these data, and previous research on people who have injected drugs (Hammersley et al., 2016) it appears that multiple unexpected bereavements can traumatise people and contribute to serious mental health problems.
Psychological treatment for eating disorders currently tends to focus on changing present dysfunctional behaviours and thoughts. There appears to be a need also to address more longstanding issues from the past, especially bereavements, anxiety and abuse, and to learn more functional strategies for coping with feelings. Indeed, schema therapy for eating disorders is beginning to be used for this purpose (Pugh, 2015;Simpson & Smith, 2019). Focusing on weight gain and a balanced diet will not address whatever trauma issues Life stories of people with eating disorders 20 remain from the past, nor will it help people to express emotion or manage anxiety more effectively. Because these different issues are interdependent, it will often be difficult to treat them separately, which is where more systemic interventions such as schema therapy may have potential.
In conclusion, this study adds to the evidence that suggests that interventions for eating disorders need to consider how the past is continuing to affect the client's current psychological condition, as well as implementing changes in dysfunctional patterns of eating and restraint activity.  Figure 1: Relationships between prior life difficulties and an eating disorder.